The history of Campaign for Coverage, began in PEI
Yes, this website was originally used in the Maritime provinces of Canada, during a time period when the public was facing a funding resistance from government, regarding multiple sclerosis treatments.
As a background to this, perhaps you remember a time when there was a theory that opening veins in the neck would improve circulation in the brain, and help people recover from MS. It was a controversial subject, and governments didn’t want to pay for such treatments until they were proved to be beneficial. People campaigned. People got news coverage. People tried influencing their politicians, and so on.
Cancer Chemotherpy funding
On the other hand, there are MANY examples, and I have personal knowledge of them, in cancer treatment, where an effective but very expensive drug comes into use. At first, it’s use is limited to very small groups of eligible patients, but as the drug proves effective and cures people who were otherwise uncurable, more and more patients want to be treated with it too, and govermnents resist. Their budget wasn’t built for the massive expenses of new cancer treatment drugs.
Herceptin for breast cancer treatment is an excellent example. During my years as a radiologist in the Cross Cancer Institute, I recall small groups receiving Herceptin, and other groups of breast cancer patients being SO UPSET that they were not allowed to receive it too. Naturally, they did their public outcrys, their media appearances, their secret meetings with ministers of health, provincial MLAs, and so on. Those WERE effective gradually. And the drug Herceptin was worth it. It has been an amazing benefit to patients with breast cancer.
This is something that happens over and over. New drug, new reason to campaign to get drug coverage extended to pay for it.
Sometimes I’ve been a passive bystander observing this. Other times, I’ve been a fairly quiet member of committees that discuss these things. I never have been in a position of power to make these decisions though. I’ve never been a Finance Minister or Minister of Health, and they are the one’s who ultimately make such decisions. But when you are sitting on a committee, discussing the problem of patient wanting a drug, that isn’t affordable in the current budget, the tension is there, between compassion for one group, and your thoughts about other groups of patients, who also need the budget spent on their treatments. It becomes a judgement call, and I hate to say it, but I’ve seen some people make the decision swayed by which group of patients is going to be less bothersome politically. I hate seeing that.
Well anyway, I guess I’m saying, history repeats. If you are reading this because you are investigating how to campaign for a medical treatment coverage, these take-away points. Do it. DO CAMPAIGN. Your doctors aren’t going to do it for you.
Below, I’m changing topic. When I first got this website, I asked for some content to be written for it by a freelance writer. What they wrote below, is very crappy, the next 3 paragraphs. I put it into blockquotes. I hate writing like this.
“Quick Recovery” is a concept which any person looks forward to anytime his/her body is in ill health. This simple concept entails recuperating from the attacking illness in the short time possible with minimal utilization of medical costs involved even and with no other body complications so that the person may carry on with his/her daily activities and schedule normally.
Sadly though, there are some illnesses where by health providers and clinician pronounce that they are incurable but can be managed. Of course the costs of management are hefty; you will agree that if a condition is incurable, then its management entails a lifetime commitment.
Something which is not affordable by everybody and thus poses enormous challenges, pressures, financial burden and threats of discontinue with one’s normal activities.
Here’s more of the junk written by a freelance writer, when I asked them to get this website alive, by writing about some medical conditions that sometimes need campaigns for drug coverage. It’s crap writing.
Some conditions such as Multiple Sclerosis and MS plaques and other body paralyzing conditions of the Central Nervous System (CNS) such as Alzheimer’s disease, Parkinson’s disease, Epilepsy, and Stroke as well as other illnesses such as Lupus, Sjogren’s syndrome, Fibromyalgia, Lyme disease, Myasthenia, Sarcoidosis, etc, which may be costly to treat and manage because the costs of medication might not be affordable and the duration of management might be lengthy or a lifetime thus posing financial hardships to even patients who might have an insurance cover.
During such instances, the patients will need support from family, friends or well-wishers to finance the treatment expenses.
Some patients may opt to go for Complementary and Alternative Medicine (CAM) especially in cases whereby the condition they are so much seeking treatment of is incurable and only costly management seems the only solution offered by conventional medicine. This also implies the use of additional costs which will also strain such a patient.
The government might be tasked in alleviating the pain and financial strain such individuals undergo because it’s their constitutional right to access quality health care and medication at affordable costs, but that’s not always how things go especially with the numerous bureaucratic government worldwide.
And certainly it was not a smooth sail for the previous owners of this website too in their fight for affordable treatment and medication for some serious diseases like Multiple Sclerosis.
Provincial health care plans in Canada are all in a bind, because costs of pharmaceuticals are rising far faster than their revenues or inflation.
This website was formerly used for New Brunswick and Prince Edward Islanders to campaign for coverage in provincial budgets. Now this site is re-developing into a general white paper on the balance of individual and societal perspectives. More to be added in the future.
Here’s more, written by a non-physician, about some multiple sclerosis, but I seriously have to find time to edit this. I had asked for some background writings about mainstream and alternative treatments for multiple sclerosis, and this is what came back.
Currently the website is being rebuilt and will feature content about management of Multiple Sclerosis, Ms Plaques and other related diseases of the Central Nervous System as well as diseases which result due to the autoimmune nature of the body, such as lupus or Sjogren’s syndrome.
Using Acupuncture to Manage Multiple Sclerosis
Acupuncture is a form of traditional Chinese medicine practice which is based on a theory of proper body functioning which involves the flow of energy through some 14 pathways usually referred to as ‘meridians‘, throughout a person’s body.
The practice has a basis laid on the theories of ancient Chinese medicine which indicate that diseases attacks a person’s body because of imbalances or disruptions in the flow of energy throughout the body. Acupuncture greatly helps return the flow to normality.
It involves the stimulation of specific areas on the human skin, by inserting thin, metallic needles into points along the pathways (meridians) in the body in order to change the flow of energy to the required measure.
Other methods of stimulating the skin
There are also other methods of stimulating the skin such as, finger pressure usually known as acupressure, cupping the skin with small heated cups, through electroacupuncture which involves the use of electrically-stimulated needles, and lastly through moxibustion which entails the use of smoldering fibers of an herb generally called “Asian mugwort“.
How it helps
For MS patients, acupuncture helps to reduce fatigue, pain and to boost the mood of the patients which in turn reduces stress and depression thus improving the quality of life of the patient. However there is no evidence to prove this and thus prior precaution should be undertaken before getting involved in the practice. It’s advisable to consult with a health care provider before getting involved with this practice
Otherwise, acupuncture can provide MS patients who exhibit symptoms such as pain, body numbness, spasticity, bladder & bowel problems and also depression. It’s better to use it as an addition doctors medication as well as some exercising programs.
Though acupuncture is generally safe, it should be performed by a well-trained acupuncturist. The needles used to perform the practice should be sterile, in order to avoid any risk of other conditions such as hepatitis or AIDS.
There is no conclusive study to show the impact of the practice on the body’s immune system is of a MS patient. Therefore is several schedules of the program do not yield to anything positive on the patient’s body, then it’s advisable to quit the program.
Exercise This Helpful Multiple Sclerosis
Exercises and workouts are very important to general well-being and health of a person. They help to put the body in good shape and also encourage good flow of blood among other benefits. This means that workouts and exercises are helpful in the management of several MS symptoms. MS patients should be ready to undertake simple workouts such as aerobics in the early stages of MS symptoms. Such a patient benefits in several ways which includes;
- Improved blood flow and better cardiovascular fitness.
- Improved strength of bones to ease the mobility of a person and more functionality of the body.
- Improved bladder and bowel function.
- less fatigue and depression as the body becomes more active yet relaxed.
- They enable the patient to have increased positive attitude towards the condition.
- They enable the patient to have increased participation in social activities which is a good sign of less depression and increases the mood of the patient.
- Improved cognitive functioning of the body.
- Improved breathing.
MS patients need to participate in a workout program which fits the capabilities and limitations of the patient according to the symptoms. But it’s advisable to join the program in the very early stages of MS. As changes occur in MS symptoms, then necessary adjustments should be made to fit the purpose of the whole program to the patient.
It’s critical to follow the advice of a physical therapist who is experienced with MS and can help in designing, supervising and revising an exercise program when need be. It’s also paramount to make prior consultations with your health care provider for a go ahead of the workout program.
The timing of the program should be carefully undertaken with avoidance of hotter periods of the day which might make one more fatigued.
Recommended Workouts and Exercises:
Most yoga programs lay emphasis on relaxation, breathing and small deliberate body motions which can work well for a MS patient. However, it’s critical for a MS patient to find the right yoga program which suits his/her needs appropriately.
2) Adaptive Tai Chi
This exercise is usually characterized by deep breathing and slow gentle movements making it a good option too for MS patients. Another benefit of it is that all this can be done while sitting thus the patient doesn’t strain much.
3) Exercise in Water
Water possesses some unique qualities which are very beneficial to MS patients. The most notable one is the ability for MS patients to partake some motions in water which would be strenuous to try on land, thus improving the body mobility.
Are Alternative Medicine & Practices Safe for MS Patients?
The use of diets, supplements, herbs and meditation not conventionally accepted for treatment as well as some traditional practices such as ‘Tai Chi‘ or acupuncture has in some instance proven to be effective in the treatment and management of MS. These practices have been at times used in combination with supportive conventional medicine to work successfully in treating MS which is incurable using conventional medicine.
It should be noted however that alternative medicine in the treatment of MS, and this is true to the treatment of other diseases may not be effective and safe because the therapies or practices used are neither regulated nor have they been scientifically proved to be effective in the treatment of most diseases, and hence may pose some danger and serious health concern.
In the treatment of MS, the use of alternative medicine may result to adverse reactions of the immune system or may produce a complex of side effects and may at times interact negatively with conventional treatments if taken together. They may also have no consequence or benefit at all and just result to over-burdening the patient financially.
Effectiveness and Safety of Using Alternative Meds to Treat MS.
For the treatment of MS using alternative medicine or combination of both with conventional medicine may require prior consultation and approval from a health care provider or a clinician before a patient is subjected to the practices. It’s vital for the health provider to determine the effectiveness and also to predict the extent of treatment that a patient may get from the use of alternative medicine. There are several reasons for this which include:
The extent and damage caused by MS is variable among different individuals, so are the symptoms which prevail. Therefore what may work for a certain patient may be lethal to another, and hence caution should be exercised before a patient buys into the idea of trying an untested practice.
Different people react to treatment differently by producing varying side effects as per their bodies’ immune systems. Some side effects are fatal and therefore when using untested medicines and practices it’s never safe to do so without prior consultations.
Guidelines for Using Alternative Medicine to Treat MS
As we have seen, before treating MS using alternative meds, a patient needs to consider a few factors, but it’s highly advisable that such a person consults a health care provider.
Whether or not you decide to undertake alternative medicine in the treatment of MS it is always necessary to keep your current health provider informed of your progress and treatments provided so that they may be at a position to help you in case of complications.
It’s also vital for you to stick to any medication or therapy that has been prescribed to you by a heath care provider because they are conventionally approved and pose little risk and could help. In the event that that they interact negatively with the alternative meds that you take, be sure to seek guidance from your health care provider.
It could also be reasonable to journal the whole experience of using alternative meds to cure MS because if they truly work, then you’d be at a position to save another soul. In the event that they are fatal or lethal, then there are chance that the doctor can easily discern what you have undergone and try to help you swiftly.
Otherwise the person needs to question a few factors before enrolling in an alternative medicine or practice plan. They include:
- What practices of therapies does the treatment involve?
- What are the cost?
- Who are providing the treatment?
- How is it supposed to work?
- What’s the effectiveness rate? How many patients with similar condition have been healed successfully with little or no complications?
- What are the risks involved?
What is Multiple Sclerosis (MS)
Multiple Sclerosis (MS) is a disease which affects young adults mostly between the age of 20-40. The disease affects the Central Nervous System (CNS) of the victim’s body and it’s characterized by the immune system attacking the myelin which covers the nerve cells of the spinal cord.
This results to demyelination, inflammation and neurodegeneration of the CNS because myelin damage results to a disrupt of the communication between the brain and the rest of the body. At times the disease may affect the optic nerve leading to poor vision of the patient.
The lack of communication may lead to paralysis of the person such that the patient may even fail to walk. However the most notable symptoms as a result of the failed process of the brain sending signals to the body include:
- Muscle weakness and in some cases muscle spasms.
- Difficult in walking.
- Body fatigue and weakness.
- Numbness of muscles and joints.
- Poor or blurred vision.
- Poor bowel and bladder control.
- Poor sexual habits.
- Inflammation and pain
- Lack of memory
- Loss of balance
- Minimized coordination and mobility of hands.
- Stress and depression.
It should be noted that the symptoms of MS may vary from one individual to the other because of the location and severity of the attack. At times the attack could last for a week, several weeks or even months. The attacks are usually followed by periods of remission or no symptoms but that doesn’t determine the severity of the attack.
There are no clear causes of MS although it is believed that the disease is caused by an auto attack of the body’s immune system. The immune cells attacks the CNS and causes an inflammation which leads to damages the sheath of the nerve called ‘myelin‘ which covers the nerve cells. The attack usually is more prevalent to women than it is to men.
There are beliefs that the condition is genetic and runs down family genes, though there are other beliefs that it can be triggered by environmental factors and also the presence of certain diseases.
Recently, there was a study which suggested that the modern vaccine for Hepatitis B was also be a cause of MS.
Treatment and Cure
Currently, there is no clinical cure of MS using conventional medicine. However, early detection may enable the patient to be subjected to some treatments which can help slow down the development of the disease.
The treatments help to stabilize the body from earlier symptoms and help a patient to maintain normal body functions. For instance a patient may be subjected to steroids to decrease the severity of the disease as well as medicine to help control bladder problems, muscle spasms and fatigue.
Alternative medicine has also been greatly adopted to the treatment of MS and some practices which have proven effective includes:
- A scheduled healthy exercise/workout program during initial stages of detection.
- A healthy lifestyle and diet which includes sufficient rests.
- Counseling and group support to help one accept and deal with the condition.
- Use of body-support devices such as wheelchairs, bed lifts etc.
- Use of body supplements especially one’s rich in vitamin D.
- Avoidance of strenuous activities, stress and high temperatures.